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Nine-year old Shiloh Pepin wants to be just like any other girl her age, but she suffers from an extremely rare disease. She is the worlds only living mermaid.

Shiloh has Sirenomelia or mermaid syndrome, a congenital disorder that means her legs are fused together. She was born with almost no large intestine and just a small piece of her kidney. She has no rectum, no vagina and no bladder.

The film meets Shiloh and her family as she is planning to celebrate her 10th birthday; a milestone doctors said she would never reach. As she approaches this landmark her parents face a series of new dilemmas. After years of doing everything in their power just to keep her alive, how far should they now push their daughter to become more independent?

With intimate access to her family this film follows Shiloh as she leaves home on her own for the first time to attend a weeklong summer camp.

The strain of looking after her is taking its toll on her parents relationship, but when Shilohs health takes a turn for the worse they find themselves fighting for her life.

Filmed over six months this is the unforgettable story of an ordinary family living with an extraordinary condition.

Channel 4
1 x 60mins
TX: 18/05/10